Happy New Years

Draining the Chronic Illness Well of Anger

td81_chandraartI wanted to take a moment to wish everyone a happy and hopefully more healthful 2017. I know we could all use it, no matter what kind of year 2016 was for us. I find myself in much better health at the end of 2016 than I had at the beginning; a blessing to be sure. It is not without its frustrations, complications and stalemates, of sorts. Perhaps this is one of many reasons I’ve remained silent all these months, though mostly that has been to spare the world a rage so scathing simply standing near me would singe the hairs right off your body.

To explain all this rage would require explaining my life and none of us have time for that. But I know exactly where it comes from and why it is all consuming. I have a feeling many of us who struggled with EDS just enough through our early lives to know that “something is wrong,” but not enough to show on tests has that all consuming well of anger. It lives on disbelief, denial, being pushed constantly beyond our limits. It feeds off our feelings of ineptitude, inadequacy, envy and enervation before it even wallops us to the point of becoming an actual, definable, chronic illness.

Then comes years and years of trying to get a diagnosis and as our bodies fall apart, so too do our lives, our families, our financial well-being, our homes. We have no choice but to watch everything we worked so hard for, harder than any healthy person can ever imagine, crumble before our eyes. So quickly it topples, if we blink, we might miss it.

All the while, the disease continues to ravage us to the point where we begin to dream about the good old days of just envying others for their seemingly boundless energy and perfectly working brains and bodies: Because by this point for many of us a decade has gone by and we still have no diagnosis, no relief and we can’t even accomplish something as simple as sitting up in a chair without severe head pain, dizziness, and vomiting. At this point, many of us can wish for little more than death. After all, what life is living in a dark room, completely alone, with nothing to entertain us but our tortured thoughts of the past and our pain?

I myself left regular full-time employment in late 2008. Nine years later, I am technically still waiting on a diagnosis because I haven’t had the genetic testing that will confirm it. I have finally located a doctor, but she isn’t taking new patients. I call every month. I often shrug and wonder why I bother every time I make that call.

Why? Because the reality is that I know she can do very little more for me than I’m already doing for myself. I’ve found the best things I know to care for myself and while I realize their limitations, I also realize that there’s little more the medical industrial complex offer me. The symptoms that persist tell me I likely have a chiari malformation that’s being missed by my neurologists’ refusal to administer a standing MRI (more denial) and my GI’s refusal to acknowledge and test for gastroparesis and/or chronic diverticulitis (yet more denial).

Without addressing these problems, I will never achieve better health than I have right now, nor will I likely live long. However I am literally out of options until I get with this new doctor who hopefully knows specialists who are actually familiar with these being common problems in EDS or knows how to address them herself. Of course with a Chiari, there’s little good news to be had, anyway.

So we spend our lives knowing we are ill, watching ourselves decline helplessly, feeling forever like we’re not being taken seriously, like our concerns aren’t being addressed with the level of seriousness they deserve, like we’re being treated like alarmists, liars, insignificant and meaningless until it’s too late, far too late.

I suppose the consolation in all this is that I found the therapies I did, which make me far more comfortable, mobile, clear-headed and energetic than I was previously. It’s not enough to give me a “normal” life, but it’s definitely better than being stuck in bed suffering 100% of the time. Unfortunately, it’s done little to empty that well of seething red anger, either.

My new year’s resolution is to find a way to drain that well. I’m starting therapy mid-month. I’m also going to try to go back to blogging some. Honest J

One thought on “Happy New Years

  1. The worst part is not the disease (I have CFS), but the constant denial by the people who control access to the tests and treatments. [Question: would the genetics testing that is now available to consumers directly help?]

    I understand your rage. I share it in my own way – because I have learned that getting emotional only feels good for a short while, and I pay for it for days after because my body can’t dispose properly of, among other things, adrenaline.

    You are right. They are wrong. And it is more terrible to be ignored than anything else I can think of.


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